You need to spice things up if you want to become the next Jilly Cooper. Sylvia could have had an affair with the handsome man who did the MRI of her spine.
I feel I’m being gaslit. Your post starts with “The question Sylvia asks me whenever I see her is: What can be done to slow or stop this process? She is clearly interested in tolebrutinib.”
What did you advise Sylvia? What can MSers do today about smouldering MS? Can you give us a straight answer. No MSer wants to become more disabled so what should they be doing in 2026?
I think the FDA is simply pushing back on a broad indication and wants to narrow it. I suspect they are worried about the risk of liver injury. Let's wait for their next deliberation in 2026. As for Sylvia, she will need to wait for the MHRA's decision.
I was diagnosed with RRMS in 1995 but my first MS problem occurred in 1972. My diagnosis was changed to SPMS in 2000. These events were all back in the day before the arrival of the cocktail of drugs that are now available to people with RRMS abd SPMS. Now I definitely have smouldering MS but it probably started many years ago with foot drop and bladder problems. I took medical retirement in 2012 and since then my my career has turned into coping with a multitude of MS problems
I am lucky, I can still walk 20 or 30 meters and get onto my mobility scooter and get into town but a manual wheelchair is essential in the evening when I am tired.. Sadly I have always been ineligible for any drugs that might have helped me and now it is too late. I'm too old (71) and MS has been smouldering for too long. I am quite sure there are lots of people like me who just have to get on with it.
In +- 15 , 20 days time is my 10 year aniverssary of the first symptom, today i am gonna run 1 hour +- to prepare for the run i do every year on that day 16km
Had hsct 17months after dx my Neuro doc which i love, said i was comiting suicide
Today?
He says i am a case study
Happy new year to all
Ps: Often times i think about every pwms when i am running
I am upset, disgusted, disillusioned and angry by reading about Sylvia.
Yet again another example of the higher your “iq” and bank balance is the more likely you are to get better treatment for MS and crucially more effective treatment.
It is unforgivable that neurologists are able to play by different rules in regards to treatments and the early intervention there of. I would imagine that as being a proponent of early aggressive treatment, patients lucky enough to have you, Professor Giovannoni, as their Neurologist have a better situation and go on to have a better outcome.
From diagnosis Lemtrada was spoken about as a treatment for me. Nothing came of it as my Neuro decided it had risks. I was even told by the neuro to Google more about it. I repeatedly asked to be treated with HSCT/Lemtrada but to no avail. His opinion of AHSCT was it was far too dangerous and Lemtrada was also dangerous and I would imagine he thought they were too expensive.
I could not afford to have it privately as “celebrities” and those with money have done. If something is approved by NICE then it should be offered. Whatever one’s opinion of AHSCT and other treatments is should not detract from the patients wishes is.
The postcode lottery for treatment exists to this day. Depending on which part of not so United Kingdom you are in determines what NICE approved treatment you are given, in my most recent example I am not able to get Famprya because I’m in England and not in other parts of the UK. Is this fair? Of course it isn’t. Whatever it takes to resolve this has to be taken by the powers that be. No more excuses.
I have PPMS diagnosed in 2017 after many years of unknown symptoms and am sure I have smouldering MS. I have been seriously disabled for years now and I believe that had I had high efficacy treatment early my situation would be different.
With regards to AHSCT treatment a friend I met through the PPMS groups, the most exclusive groups no one wants to be a member of, travelled to Mexico in 2016 to have it following an inheritance. He is to this day active and not in a wheelchair.
Thank you also for mentioning about the legal matters.
Sadly, social determinants impact healthcare more generally. Did you know that life expectancy along the District Line varies significantly by neighbourhood, with wealthier areas like Kensington & Chelsea showing much higher averages (e.g., 86.5 years for women) than poorer areas. At the same time, parts of East London (like Mile End East near the DLR) can be lower, reflecting London's stark health inequalities, with some Tube-linked areas having up to a 20-year difference in predicted life expectancies, as shown in the "Lives on the Line" project.
I am aware of the impact. That is clearly shown by your great example and do get it. However not getting effective treatment that one is entitled to is different and shocking. Then there is the postcode lottery that continues to this day. There are plenty of PWMS who live in affluent areas who don’t get the treatment they should and who are left to their own devices. Intelligence should not be a factor in anything to do with treatment. Surely all PWMS have a right to expect all Neurologists to play by the same rules, that no matter where they are in the UK, no matter how well off or not they are and whatever their IQ may be they get uniform treatment and drugs. Instead their continues to be disparity
I live in Bosnia, which is one of Europe's poorest countries. I speak fluent English, I read a lot about MS, I visit neuros abroad. You could say that I am not your typical Bosnian MS patient. However, none of my hometown neuros suggested higher efficacy DMT ever. It was always me litterally begging them. I considered AHTC but it's impossible to pay for everything yourself (for Gods sake, my parents offered to sell their vacation home). And then came covid which destroyed me.
Sometimes I think that those who do not read anything about MS (i.e. who are not informed) are happier. They accepted the status quo. I know lots of them.
Don't know if they are "actually" happier, and this is probably an overall life strategy (in my opinion). Interesting research question and I've thought about different "angles" on that (was a psychologist). Best to you in Bosnia.
I could have been Sylvia had I not contracted covid. I invested serious money in DMTs (Rituximab) when they were not available through insurance (I could either pay for DMTs myself or wait for couple of years on the waiting list. I had help from all family members, with Bosnian salary I could not have afforded anything. Later, through sheer luck, digging and begging, I was approved Ocrevus via insurance. But covid did a number on me. I am now EDSS 4,5, and I could run a 5k race prior.
I am glad that patients like Sylvia exist. I am happy for them.
I hope that someday there will be a cure for us who got worse.
Probably many, including people without MS. I know few guys who became diabetic after covid. One who started having seizures. But there are also lot of them who are doing just fine (even with MS). God only knows...
I have been on Tysabri for nearly 14 years and it has served me very well as I'm still walking and still working (not in my previous career as I had to stop due to MS, sadly).
15 years ago my body began to reject Rebif and was offered to go back on Copaxone which didn't work for me and I refused. I desperately wanted to start Tysabri but wasn't allowed, I believe due to NICE guidelines.
I decided to opt of no DMT for 8 months which then led to many relapses and was eventually given Tysabri.
I honestly believe that had I been put on it earlier, I would have benefited massively.
As for smouldering MS, yes I have that.
I use a walking aid, can only work 15 hours a week due to fatigue and often trip or fall.
I've spoken to my neurologist about this and she doesn't appear to agree with the idea.
I appreciated your piece about Mary such a sad situation but it inspired my mother and I to invite an elderly neighbour who was on her own for Christmas lunch to join us . It’s easy to feel sorry for oneself but then reading something like this I realise that I still have so much to be grateful for. I
I was diagnosed in 2016 & offered Tysabri or Lemtrada. I opted for Tysabri & have done well on it (ie no new symptoms/relapses), but have definitely become more disabled. I'm now wondering if I should have gone for Lemtrada.
Prof G my wife was diagnosed with PPMS five years ago and was offered no treatment options and she has still not been offered any treatment at all. From the previous questions I have asked you it appears that Ocrevus is the only NICE approved treatment for PPMS. Therefore can I assume from what you say in this article she should have been offered Ocrevus when diagnosed?
She is definitely a ‘Mary’ as her disability worsens.
I appreciate I am lucky, I have a health professional background. So when my neurologist put me on Dimethyl Fumarate (which he said that he would take if he had MS), I did a lot of research. In NZ the most efficacious DMTs available are Natalizumab and Ocrelizumab. Alemtuzimab is not available. I decided on Natalizumab as we were going through COVID at the time. I saw the neurologist and told him I wanted to change DMT after a brief conversation where I reminded him that you couldn’t reverse brain damage he agreed. I was lucky to be able to advocate for myself but I know of many pwMS who weren’t able to, or who trusted the neurologist. I feel angry that some people have been so let down by a system that is stuck in the dark ages!
I suspect I know EXACTLY who she saw in 2015 as I was also seen at a major London teaching hospital in 2014. My outcome can be paraphrased using your exact words. But I was not lucky enough to secure a referral to Bart’s; instead I went to Moscow. But still…
“The only reason Mindy has done so well and will do well long term is that she is an educated, determined, and self-confident individual who was not prepared to take no for an answer. She knew her rights and made sure she got her MS treated the way she wanted it to be treated”.
There are thousands out there who are NOT able to advocate for themselves. Luckily we have Facebook Forums! 🙂
I was diagnosed with very aggressive relapsing remitting MS in 2017 after several relapses in a short period. Agreed with the neurologist that I wanted to nuke the MS. Offered tysabri or lemtrada as DMT. High virus load so Unsuitable for tysabri. Hospital committee agreed it would fund lemtrada as my first treatment. Delayed while latent TB was treated (that was an unexpected development lol). So from first symptoms in April to first lemtrada infusion in December my treatment path was speedy.
I stopped work in August last year due to being unable to continue to deliver my high paced analytical work and the reasonable adjustments not helping.
I’ve now been on Kesimpta for 12 months following a relapse in March last year.
No new lesions were detected in my spine MRI but neuro and I believe sensations etc were a relapse.
She normally just does brain MRIs annually and I have had no changes detected, although I feel gradually more disabled. Cognitive issues and coordination are the main Unwelcome friends. My fight back: Lost 3 stones, do aquafit and weights at gym and started NY Times puzzles, with a referral to someone in the neurology team who can help me preserve my brain pending. My walking issues are not hearing or brain according to neuro physio but too much to process, which is confusing
I hope there is a cure/vaccine developed as I have 2 daughters and worry
I guess if cure is when it doesn't come back then maybe, in remission would be a more appropriate term. My diabetes is in remission. The GP checks my HbA1C annually to make sure it is still in the healthy range. I no longer get called for diabetic retinopathy screening or see the GPs diabetic nurse. However, I assume that my pancreas is not miraculously controlling it and if I abandoned dietary control my HbA1c would head back into the diabetic range. Oh and me too. That was the only good thing about my previous Neurologist he did repeatedly scan my spine. He was just really rubbish at telling me what he found. My new team scanned my spine to establish baseline but said going forwards it would just be brain MRIs.
I switched neurologists last year after being routinely ghosted the neuro I had. I mentioned to my new neuro that I feel disease worsening even though MRI findings have indicated no new lesion formation (but did show some brain volume loss). I asked about smoldering MS and this neuro flatly stated that there is no such thing as “smoldering MS” and it was just a made up concept for drug companies to make money.
I was diagnosed initially with transverse myelitis in early 2009 which was progressed to RRMS in early 2010 after a hearing issue. As my symptoms had resolved on both occasions nothing further was recommended for treatment. After Xmas 2016 I had a further relapse however getting to see any of the MS team proved obstructively difficult due to a change of staff, when I eventually got to see a neurologist in march my symptoms had mostly resolved, he prescribed 500mg prednisolone for 5 days. Whilst the steroid was fine the cliff edge stop after 5 days pretty much left me immobile whilst my own system restarted producing steroid.
Like this person I spent some time researching MS and treatments and tried, unsuccessfully, to get onto the AHSCT trial at Sheffield. Initially I was told I was too old(57), then not ill enough. When I suggested AHSCT would possibly be more effective for treatment early after initial diagnosis, the discussion was stopped. I eventually self funded AHSCT in Delhi, again after significant research, which appears to have slowed the progression. Smouldering MS is an interesting categorisation.
You need to spice things up if you want to become the next Jilly Cooper. Sylvia could have had an affair with the handsome man who did the MRI of her spine.
I feel I’m being gaslit. Your post starts with “The question Sylvia asks me whenever I see her is: What can be done to slow or stop this process? She is clearly interested in tolebrutinib.”
What did you advise Sylvia? What can MSers do today about smouldering MS? Can you give us a straight answer. No MSer wants to become more disabled so what should they be doing in 2026?
https://gavingiovannoni.substack.com/p/metabolic-health?utm_source=publication-search
https://gavingiovannoni.substack.com/p/q-and-a-83-cladribine-vs-siponimod?utm_source=publication-search
Sylvia won’t need to ask about Tolebrutinib in future:
https://multiplesclerosisnewstoday.com/news-posts/2025/12/29/fda-denies-tolebrutinib-approval-nonrelapsing-progressive-ms/
I think the FDA is simply pushing back on a broad indication and wants to narrow it. I suspect they are worried about the risk of liver injury. Let's wait for their next deliberation in 2026. As for Sylvia, she will need to wait for the MHRA's decision.
You do realise that Mary and Sylvia aren’t real! Can the next story be about ‘Bob’ to get some gender balance.
They are real, just heavily anonymised to make them seem unreal. They exist as real patients, but will not be able to recognise themselves.
I was diagnosed with RRMS in 1995 but my first MS problem occurred in 1972. My diagnosis was changed to SPMS in 2000. These events were all back in the day before the arrival of the cocktail of drugs that are now available to people with RRMS abd SPMS. Now I definitely have smouldering MS but it probably started many years ago with foot drop and bladder problems. I took medical retirement in 2012 and since then my my career has turned into coping with a multitude of MS problems
I am lucky, I can still walk 20 or 30 meters and get onto my mobility scooter and get into town but a manual wheelchair is essential in the evening when I am tired.. Sadly I have always been ineligible for any drugs that might have helped me and now it is too late. I'm too old (71) and MS has been smouldering for too long. I am quite sure there are lots of people like me who just have to get on with it.
Patrick, same situation as I am in. We didn’t have the aggressive options early on.
Caneco
53 years with ms
Was it a benign course?
Thanks
Very informative for me.I use ocrevus for 3 years.
My doctor doesn’t prescribe alemtuzumab, he keeps saying it’s too dangerous
Thank you
Ask him why he is an alemtuzzumab refusenik next time you see him.
I will,thank you
Nice work PG
This is the kind of posts you excel
In +- 15 , 20 days time is my 10 year aniverssary of the first symptom, today i am gonna run 1 hour +- to prepare for the run i do every year on that day 16km
Had hsct 17months after dx my Neuro doc which i love, said i was comiting suicide
Today?
He says i am a case study
Happy new year to all
Ps: Often times i think about every pwms when i am running
Luis
I am upset, disgusted, disillusioned and angry by reading about Sylvia.
Yet again another example of the higher your “iq” and bank balance is the more likely you are to get better treatment for MS and crucially more effective treatment.
It is unforgivable that neurologists are able to play by different rules in regards to treatments and the early intervention there of. I would imagine that as being a proponent of early aggressive treatment, patients lucky enough to have you, Professor Giovannoni, as their Neurologist have a better situation and go on to have a better outcome.
From diagnosis Lemtrada was spoken about as a treatment for me. Nothing came of it as my Neuro decided it had risks. I was even told by the neuro to Google more about it. I repeatedly asked to be treated with HSCT/Lemtrada but to no avail. His opinion of AHSCT was it was far too dangerous and Lemtrada was also dangerous and I would imagine he thought they were too expensive.
I could not afford to have it privately as “celebrities” and those with money have done. If something is approved by NICE then it should be offered. Whatever one’s opinion of AHSCT and other treatments is should not detract from the patients wishes is.
The postcode lottery for treatment exists to this day. Depending on which part of not so United Kingdom you are in determines what NICE approved treatment you are given, in my most recent example I am not able to get Famprya because I’m in England and not in other parts of the UK. Is this fair? Of course it isn’t. Whatever it takes to resolve this has to be taken by the powers that be. No more excuses.
I have PPMS diagnosed in 2017 after many years of unknown symptoms and am sure I have smouldering MS. I have been seriously disabled for years now and I believe that had I had high efficacy treatment early my situation would be different.
With regards to AHSCT treatment a friend I met through the PPMS groups, the most exclusive groups no one wants to be a member of, travelled to Mexico in 2016 to have it following an inheritance. He is to this day active and not in a wheelchair.
Thank you also for mentioning about the legal matters.
Sadly, social determinants impact healthcare more generally. Did you know that life expectancy along the District Line varies significantly by neighbourhood, with wealthier areas like Kensington & Chelsea showing much higher averages (e.g., 86.5 years for women) than poorer areas. At the same time, parts of East London (like Mile End East near the DLR) can be lower, reflecting London's stark health inequalities, with some Tube-linked areas having up to a 20-year difference in predicted life expectancies, as shown in the "Lives on the Line" project.
Please see: https://trustforlondon.org.uk/data/life-expectancy-borough/
I am aware of the impact. That is clearly shown by your great example and do get it. However not getting effective treatment that one is entitled to is different and shocking. Then there is the postcode lottery that continues to this day. There are plenty of PWMS who live in affluent areas who don’t get the treatment they should and who are left to their own devices. Intelligence should not be a factor in anything to do with treatment. Surely all PWMS have a right to expect all Neurologists to play by the same rules, that no matter where they are in the UK, no matter how well off or not they are and whatever their IQ may be they get uniform treatment and drugs. Instead their continues to be disparity
This: *IQ and bank balance*
I live in Bosnia, which is one of Europe's poorest countries. I speak fluent English, I read a lot about MS, I visit neuros abroad. You could say that I am not your typical Bosnian MS patient. However, none of my hometown neuros suggested higher efficacy DMT ever. It was always me litterally begging them. I considered AHTC but it's impossible to pay for everything yourself (for Gods sake, my parents offered to sell their vacation home). And then came covid which destroyed me.
Sometimes I think that those who do not read anything about MS (i.e. who are not informed) are happier. They accepted the status quo. I know lots of them.
Sorry for the long rant, I am just sad
Don't know if they are "actually" happier, and this is probably an overall life strategy (in my opinion). Interesting research question and I've thought about different "angles" on that (was a psychologist). Best to you in Bosnia.
I could have been Sylvia had I not contracted covid. I invested serious money in DMTs (Rituximab) when they were not available through insurance (I could either pay for DMTs myself or wait for couple of years on the waiting list. I had help from all family members, with Bosnian salary I could not have afforded anything. Later, through sheer luck, digging and begging, I was approved Ocrevus via insurance. But covid did a number on me. I am now EDSS 4,5, and I could run a 5k race prior.
I am glad that patients like Sylvia exist. I am happy for them.
I hope that someday there will be a cure for us who got worse.
Hi Belma, I wonder how many of us there are that Covid did in. There have been no answers after that…
Probably many, including people without MS. I know few guys who became diabetic after covid. One who started having seizures. But there are also lot of them who are doing just fine (even with MS). God only knows...
I am 21 years diagnosed and on my third DMT.
I have been on Tysabri for nearly 14 years and it has served me very well as I'm still walking and still working (not in my previous career as I had to stop due to MS, sadly).
15 years ago my body began to reject Rebif and was offered to go back on Copaxone which didn't work for me and I refused. I desperately wanted to start Tysabri but wasn't allowed, I believe due to NICE guidelines.
I decided to opt of no DMT for 8 months which then led to many relapses and was eventually given Tysabri.
I honestly believe that had I been put on it earlier, I would have benefited massively.
As for smouldering MS, yes I have that.
I use a walking aid, can only work 15 hours a week due to fatigue and often trip or fall.
I've spoken to my neurologist about this and she doesn't appear to agree with the idea.
I suggest arming yourself with these papers at your next visit:
https://journals.sagepub.com/doi/10.1177/17562864211066751
https://onlinelibrary.wiley.com/doi/10.1002/ana.27034
https://linkinghub.elsevier.com/retrieve/pii/S2211-0348(24)00770-3
Thank you very much
I appreciated your piece about Mary such a sad situation but it inspired my mother and I to invite an elderly neighbour who was on her own for Christmas lunch to join us . It’s easy to feel sorry for oneself but then reading something like this I realise that I still have so much to be grateful for. I
I was diagnosed in 2016 & offered Tysabri or Lemtrada. I opted for Tysabri & have done well on it (ie no new symptoms/relapses), but have definitely become more disabled. I'm now wondering if I should have gone for Lemtrada.
Prof G my wife was diagnosed with PPMS five years ago and was offered no treatment options and she has still not been offered any treatment at all. From the previous questions I have asked you it appears that Ocrevus is the only NICE approved treatment for PPMS. Therefore can I assume from what you say in this article she should have been offered Ocrevus when diagnosed?
She is definitely a ‘Mary’ as her disability worsens.
Yes, even in PPMS, early effective treatment is best.
The consultant didn’t even mention or discuss treatment(s).
I appreciate I am lucky, I have a health professional background. So when my neurologist put me on Dimethyl Fumarate (which he said that he would take if he had MS), I did a lot of research. In NZ the most efficacious DMTs available are Natalizumab and Ocrelizumab. Alemtuzimab is not available. I decided on Natalizumab as we were going through COVID at the time. I saw the neurologist and told him I wanted to change DMT after a brief conversation where I reminded him that you couldn’t reverse brain damage he agreed. I was lucky to be able to advocate for myself but I know of many pwMS who weren’t able to, or who trusted the neurologist. I feel angry that some people have been so let down by a system that is stuck in the dark ages!
I suspect I know EXACTLY who she saw in 2015 as I was also seen at a major London teaching hospital in 2014. My outcome can be paraphrased using your exact words. But I was not lucky enough to secure a referral to Bart’s; instead I went to Moscow. But still…
“The only reason Mindy has done so well and will do well long term is that she is an educated, determined, and self-confident individual who was not prepared to take no for an answer. She knew her rights and made sure she got her MS treated the way she wanted it to be treated”.
There are thousands out there who are NOT able to advocate for themselves. Luckily we have Facebook Forums! 🙂
I was diagnosed with very aggressive relapsing remitting MS in 2017 after several relapses in a short period. Agreed with the neurologist that I wanted to nuke the MS. Offered tysabri or lemtrada as DMT. High virus load so Unsuitable for tysabri. Hospital committee agreed it would fund lemtrada as my first treatment. Delayed while latent TB was treated (that was an unexpected development lol). So from first symptoms in April to first lemtrada infusion in December my treatment path was speedy.
I stopped work in August last year due to being unable to continue to deliver my high paced analytical work and the reasonable adjustments not helping.
I’ve now been on Kesimpta for 12 months following a relapse in March last year.
No new lesions were detected in my spine MRI but neuro and I believe sensations etc were a relapse.
She normally just does brain MRIs annually and I have had no changes detected, although I feel gradually more disabled. Cognitive issues and coordination are the main Unwelcome friends. My fight back: Lost 3 stones, do aquafit and weights at gym and started NY Times puzzles, with a referral to someone in the neurology team who can help me preserve my brain pending. My walking issues are not hearing or brain according to neuro physio but too much to process, which is confusing
I hope there is a cure/vaccine developed as I have 2 daughters and worry
I guess if cure is when it doesn't come back then maybe, in remission would be a more appropriate term. My diabetes is in remission. The GP checks my HbA1C annually to make sure it is still in the healthy range. I no longer get called for diabetic retinopathy screening or see the GPs diabetic nurse. However, I assume that my pancreas is not miraculously controlling it and if I abandoned dietary control my HbA1c would head back into the diabetic range. Oh and me too. That was the only good thing about my previous Neurologist he did repeatedly scan my spine. He was just really rubbish at telling me what he found. My new team scanned my spine to establish baseline but said going forwards it would just be brain MRIs.
I switched neurologists last year after being routinely ghosted the neuro I had. I mentioned to my new neuro that I feel disease worsening even though MRI findings have indicated no new lesion formation (but did show some brain volume loss). I asked about smoldering MS and this neuro flatly stated that there is no such thing as “smoldering MS” and it was just a made up concept for drug companies to make money.
I also get eye rolls at the term smouldering MS..
I was diagnosed initially with transverse myelitis in early 2009 which was progressed to RRMS in early 2010 after a hearing issue. As my symptoms had resolved on both occasions nothing further was recommended for treatment. After Xmas 2016 I had a further relapse however getting to see any of the MS team proved obstructively difficult due to a change of staff, when I eventually got to see a neurologist in march my symptoms had mostly resolved, he prescribed 500mg prednisolone for 5 days. Whilst the steroid was fine the cliff edge stop after 5 days pretty much left me immobile whilst my own system restarted producing steroid.
Like this person I spent some time researching MS and treatments and tried, unsuccessfully, to get onto the AHSCT trial at Sheffield. Initially I was told I was too old(57), then not ill enough. When I suggested AHSCT would possibly be more effective for treatment early after initial diagnosis, the discussion was stopped. I eventually self funded AHSCT in Delhi, again after significant research, which appears to have slowed the progression. Smouldering MS is an interesting categorisation.